Wednesday, July 27, 2005

Heads Up

Not sure how best to word this without causing hysteria, or conversely underplaying the situation. Mom's not doing good.

She has been gone from our house for five weeks now, first to UCLA hospital, than to a rehab center, now to something that looks like a convalescent home you go to die in.

We had hoped that she would gain some movement in her paralyzed legs, get her wildly fluctuating sugars under control. (In June she suddenly developed diabetes caused by the steroids they're giving her to reduce the brain swelling caused two years after the radiation treatment that killed her brain tumor...still with me?)

In the last two weeks it looked increasingly unlikely that she would ever be strong enough to live with us again, but we were hoping to get her mobile enough in her wheelchair to eventually move into an assisted living facility with Hero.

Instead, her symptoms and body functions have unilaterally decreased. Brenda (Nurse Sis) has spent the last five weeks doing eight to twelve hour shifts in Mom's room because the doctors and nurses have not been taking care of her. I know for a fact Brenda has caught at least four mistakes that would have killed Mom. Then last night at three am, Mom called the house completely out of it and with terrible pain in her right leg. In the middle of the phone call, the phone cut out, and we couldn't get the nurse on duty to go check on Mom.

It's four pm now, and Mom's doctor still hasn't checked in on her. Brenda is hoping against hope he will move her to a real hospital, but doesn't think it's likely. She's basically stuck in a room where they pay no attention to her, even though all her skills are rapidly deteriorating. If Brenda wasn't there, I don't think they'd even be changing her diaper.

Brenda works all day shifts at her real hospital job Thursday, Friday, and Sunday, which means I'll be with Mom trying to decipher what the hell is going on and telling the doctors what they should be doing. Not my strong suit. I'm much better at reading to her or bringing her a homemade dinner.

Brenda called me crying a few hours ago, totally breaking down. I say that not to betray her (she needs to be seen as strong), but because of its significance. I can count on one hand how many times I've seen my big sister cry. And it is never a good sign.

Anyway, we're freaked out and exhausted (two years now with no break...even the last year, we haven't had any days off), and there's no hope on the horizon. Mom even called Brian today to ask him to come down from Northern California, but he's too swamped with work. She knows how sick she is...she's never asked to see him before.

Mom really didn't want you all to know, especially with the good news of the Eisner Award. But obviously she was really sick if she couldn't make it to that. I'm not sure what you're supposed to do with this info...sorry to lay it on you, but if I were a regular reader and Mom suddenly died, I'd feel really betrayed.

I guess hang on to the hope Mom represents, and light a candle for her to remind you to think of her throughout the day (that's her favorite custom). And send good thoughts to Brenda, because she's the only reason Mom has been here this long for all of you to get to know and love.

By the way, her name is Barbara. Nickname is Bridge.

14 comments:

Meg said...

I read this and went outside for awhile, and now I'm reading it again. Please send Barbara our love and prayers. I'm going to go buy a candle so I can light it tonight -- it will be a small flame in a large world, but I'm sure it will be joined by many others to support a family who've inspired so many.

I know we don't exactly know each other, but I'm heartbroken at the news. You will be in my thoughts. Please let the blogger community know if there's anything else we can do to help. Take care.

Otis Frampton said...

My hopes are with your Mom.

-Otis

Brookelina said...

My prayers are with you and your family. I've been through this, and not to make light of it, but it just stinks. Take care.

David Anaxagoras said...

My candle is lit and my thoughts are with you.

Lynne said...

For Barbara,

Lighting all my candles tonight, Barbara.

I do think of you every single day. I spoke with our dear sweet Bernie on the phone today, and hearing his voice always calms me.

Since first reading your story a few months ago, and keeping tabs on Lis via her blog (well, not tabs...but you know what I mean), and getting to know Brenda and Brian and Hero, I truly feel as though I am friends with your family.

I have consistently seen one common thread throughout, and that is the beauty of the love your children have for you. That speaks so highly of you, because without your tender mothering, they would not have become the intelligent, lovely, successful children that they are. You, dear, have done one splendid job raising them. I wanted you to know how you've all become a part of my daily thoughts and prayers.

Barbara, your light(s) shines brightly in the world.

Love,
Lynne

The Dummy said...

She's in my thoughts.

Lynne said...

for Lis

I'm crying to read of your mom's health status. It has become such a habit to log into your blog to see if there's any news, and I've been worrying. I feel such a connection to her, I wish I could be there and hold her hand and put on a Bernie tape.

Take care, sweetie. Life's a bitch sometimes. (if anyone can say they understand, it's me) (been there, done that, more times than I want to recall)

all my love to all of you
Lynne

MoDigli said...

This is sad news. I wish you and your family the best, Kid Sis. Candles are lit in Ohio for Barbara and Brenda. Best wishes and positive, loving thoughts.

MoDigli said...

PS. And a candle for you, too! :)

Warren said...

The thoughts of my wife and I are with you and your strong family.

All the best,
Warren

Anonymous said...

Going to sleep soon, but a Hail Mary has already been logged in with my outgoing prayer server.

Hang in there, Leia. Give me a call if there's anything you'd like me to do that is within the realm of my feeble skills -- food, phone calls to people for additional opinions or resources, allotted time to ehar ranting and bitching from aspiring screenwriter-producers and their kin, whatever.

MIM

John Donald Carlucci said...

I'm sorry Sis. Let me know if I can help in any way.

JDC

nicholasjcoleman said...

The only time in my life I have ever lit a candle for someone was when I lit one right after 9-11, standing on my roof with my neighbors in NYC. I will light one now for you and your family.

Patrick said...

Barbara, Brenda, Brian and Elizabeth,

Please know that I am thinking of you in your time of great difficulty. I can barely keep the tears wiped away as I write this as I feel I know your family intimately.

Barbara, I know you'll be digging further into the well of strength you've had to access for so long. Don't give up.

Brenda, As much as I know you're both physically and emotionally overwhelmed by the exhaustion of your ordeal, I know you have the strength to get through this.

Brian and Elizabeth, Barbara should be proud to have both of you there as her support system. I wish that all of us could belong to a family unit such as yours.

And Elizabeth...I would not feel betrayal were Barbara to take a turn for the worse. Just great, great sadness. It goes without saying that I wish you my best.

Bye for now. Sincerely,

Patrick